We were in Tahoe for a wedding, and Gail and I managed to take a few hours to ourselves to ride on a boat. Nothing makes her happier than being on a boat, so it was a very good thing.
Wednesday, August 22, 2007
Friday, August 17, 2007
Bad Day at Black Rock
Yesterday was a bad day for me at work. Then I was late getting to a rehearsal for this weekend's wedding. Then Gail was really late getting out of dialysis because her blood pressure was too low at the end.
I reminded myself that the worst day at work is still better than the best day at dialysis.
I reminded myself that the worst day at work is still better than the best day at dialysis.
Thursday, August 16, 2007
Who's tired?
I was at a Vision Team meeting a couple of nights ago, and in the circle, I said that Gail wasn't doing very well. She's getting tired and discouraged.
Which is true, but I think I was really saying that I am not doing well. I am tired. I am tired of her being tired, tired of having to make intricate transportation plans to get her home from dialysis, tired of her not carrying her share of household duties, tired of not being able to make plans to go anywhere.
Just tired. And a little weepy.
I remind myself that lots of people have much worse things happening in their lives, but that only helps a little. This is still where I am living, and it's hard.
Which is true, but I think I was really saying that I am not doing well. I am tired. I am tired of her being tired, tired of having to make intricate transportation plans to get her home from dialysis, tired of her not carrying her share of household duties, tired of not being able to make plans to go anywhere.
Just tired. And a little weepy.
I remind myself that lots of people have much worse things happening in their lives, but that only helps a little. This is still where I am living, and it's hard.
Wednesday, August 08, 2007
Sermon Redux
I gave the sermon last Sunday, and I was pleased with how it went. I worked really hard on it, for between 7 and 10 hours probably. Gail helped me trim it down and give it a good ending.
Yesterday in the mail, I got a package that contained three copies of the sermon all laid out really nicely. One normal one, one in large print, and one translated into Spanish! They mail them to people who can't get to church and use them in Jail Ministry, etc. I had no idea that they did that with sermons. It is amazing how much more substantial it looked, all laid out and printed nice like that.
Last night, Grant called me to thank me for the sermon. The church mails it to his wife in the nursing home. He told me that they had given her a permanent that day, and that he was really "wrestling with the angel" to do that, and that the sermon had meant so much to him. And then I got an email from a woman I don't know, saying how much she appreciated it too.
This turned out to be a much more rewarding experience than I expected it to be.
Who knew?
Yesterday in the mail, I got a package that contained three copies of the sermon all laid out really nicely. One normal one, one in large print, and one translated into Spanish! They mail them to people who can't get to church and use them in Jail Ministry, etc. I had no idea that they did that with sermons. It is amazing how much more substantial it looked, all laid out and printed nice like that.
Last night, Grant called me to thank me for the sermon. The church mails it to his wife in the nursing home. He told me that they had given her a permanent that day, and that he was really "wrestling with the angel" to do that, and that the sermon had meant so much to him. And then I got an email from a woman I don't know, saying how much she appreciated it too.
This turned out to be a much more rewarding experience than I expected it to be.
Who knew?
Wednesday, August 01, 2007
Check-in with UCSF
We usually try to call UCSF at the beginning of each month to see where Gail is on the regional list. We managed to make it a conference call today, so I got to ask all my questions.
On the regional list, she is in the top few people in her blood type. She has been on the list since April 2005.
I never knew that whenever a donor is available, they do the genetic blood tests on EVERYBODY who is active on the list, all the way down.
He said the same thing he has said since she went on the list in November 2006. It could be any day, or it could be a couple of months.
He thinks it is unlikely that she would still be on dialysis by the end of the year, so that postpones the need for a fistula. I am glad about that. I really don't want her to have to have a fistula.
Of course the REALLY disappointing news is that he doesn't think they have WiFi in the hospital rooms. They have it across the street at the medical library tho, so that should work fine. I doubt they will bring me a chai in the library tho, dangit!
On the regional list, she is in the top few people in her blood type. She has been on the list since April 2005.
I never knew that whenever a donor is available, they do the genetic blood tests on EVERYBODY who is active on the list, all the way down.
He said the same thing he has said since she went on the list in November 2006. It could be any day, or it could be a couple of months.
He thinks it is unlikely that she would still be on dialysis by the end of the year, so that postpones the need for a fistula. I am glad about that. I really don't want her to have to have a fistula.
Of course the REALLY disappointing news is that he doesn't think they have WiFi in the hospital rooms. They have it across the street at the medical library tho, so that should work fine. I doubt they will bring me a chai in the library tho, dangit!
Visitors
For the last couple of weeks, I have needed to pick Gail up at dialysis on Tuesdays and Thursdays. After fretting a good bit, I decided I could get by with a little help from my friends. So I sent an email out to the usual suspects, and asked if they could pick me up at work on one of the days and drive me to Watsonville to get Gail. As you would imagine, the response was whole-hearted and enthusiastic. I had five or six people to choose from for every day. I managed to schedule it so no one had to do it more than once. And I tried to give the people who drove me a nice jar of plum/strawberry jam to thank them.
It has been quite lovely, actually. It is always about 45 minutes transit time, and I rarely get 45 minutes to just chat with people. So I have enjoyed the drive itself.
I always invite people in to see Gail. I think she likes seeing them; it's boring sitting in the dialysis room. I also like for people to know where it is and how to get her, in case we ever need to ask them for help again. At the same time I want to demystify the dialysis process, I also want people to know that this is a serious and sort of dangerous activity. I want them to understand that this is more than just sitting in an easy chair reading a book or knitting for three hours. Their responses have been interesting to watch.
One friend said that she didn't need to go in again. She had picked Gail up before, and she finds it depressing. Not Gail...Gail is fine. But the other folks, who are much sicker than Gail. She didn't have a need to see them again.
Another couple of friends were real sports and came into the treatment room even though they are uncomfortable with medical stuff. They talked a few minutes, eyes wide, and then said they would go save us a table for dinner at an adjoining restaurant.
Another friend who has kidney failure in her family came in and sat and talked with Gail, and was interested in the process. Another one was talking and suddenly said with a start, "Oh wow, I just realised that that is Gail's blood going through there!"
I think it is a real gift that our friends are willing to share the reality of dialysis with us, even just for a brief visit.
It has been quite lovely, actually. It is always about 45 minutes transit time, and I rarely get 45 minutes to just chat with people. So I have enjoyed the drive itself.
I always invite people in to see Gail. I think she likes seeing them; it's boring sitting in the dialysis room. I also like for people to know where it is and how to get her, in case we ever need to ask them for help again. At the same time I want to demystify the dialysis process, I also want people to know that this is a serious and sort of dangerous activity. I want them to understand that this is more than just sitting in an easy chair reading a book or knitting for three hours. Their responses have been interesting to watch.
One friend said that she didn't need to go in again. She had picked Gail up before, and she finds it depressing. Not Gail...Gail is fine. But the other folks, who are much sicker than Gail. She didn't have a need to see them again.
Another couple of friends were real sports and came into the treatment room even though they are uncomfortable with medical stuff. They talked a few minutes, eyes wide, and then said they would go save us a table for dinner at an adjoining restaurant.
Another friend who has kidney failure in her family came in and sat and talked with Gail, and was interested in the process. Another one was talking and suddenly said with a start, "Oh wow, I just realised that that is Gail's blood going through there!"
I think it is a real gift that our friends are willing to share the reality of dialysis with us, even just for a brief visit.
Thursday, July 26, 2007
Mine!
I think it is just time for another puppy picture. They are doing so great! They are really growing up. I am working with them on various tricks. They already know how to shake hands. Very cute.
I am working with Tichka on "Little Bark." I waggle my fingers at him and he gets a treat if he doesn't bark, but whines or makes a little cough. It's pretty cute. I am also working with him on roll-over.
I am working with Tizi on roll over and play dead. She is very smart and is getting the idea. I know we would make faster progress if I could work with her without Tichka insisting on being present!
Tichka is funny. He is much more manic than Tizi is. He will look at me in desperation trying to figure out how to get a treat. He'll fling himself into a down, thrust his paw at me, bark; anything to MAKE me give him a treat NOW!!
We are working on impulse control with him.
They are so wonderful.
I am working with Tichka on "Little Bark." I waggle my fingers at him and he gets a treat if he doesn't bark, but whines or makes a little cough. It's pretty cute. I am also working with him on roll-over.
I am working with Tizi on roll over and play dead. She is very smart and is getting the idea. I know we would make faster progress if I could work with her without Tichka insisting on being present!
Tichka is funny. He is much more manic than Tizi is. He will look at me in desperation trying to figure out how to get a treat. He'll fling himself into a down, thrust his paw at me, bark; anything to MAKE me give him a treat NOW!!
We are working on impulse control with him.
They are so wonderful.
Saturday, July 21, 2007
Flashback
I dropped Gail off at dialysis this afternoon. After a chai at Starbucks, where I am too cheap to pay for internet access, I came to the Watsonville library. What a nice little library this is. Very quiet and pleasant, and easy to get online. I didn't find a place I can plug in, but it is still nice.
I found a website the other day for the American Association of Kidney Patients. It has a web based site where you can load information about medications, doctor visits, doctor names addresses etc. I thought it might be useful to put Gail's stuff on there. Probably mostly useful as a way to make me feel like I am staying in control.
When I got here, I opened the black binder where I was keeping all her medical information and opened it up. I don't think I have opened it since she had the catheter installed, because all these feelings of fear and anxiety just washed over me. I was right back in that place where I was so afraid that she wouldn't agree to go on dialysis until she was really sick.
The last date I have in there is December 19, 2006, when we met with the dietician at the dialysis center.
We have come a long way since then. Dialysis three times a week; she has never missed. We are old hands at it now.
Now my anxiety is banked. I worry about her catheter getting infected, or knocked around by the dogs. I worry that the catheter will fail and she won't have a fistula. I guess they could do another catheter on the other side of her chest. It has taken much much longer to get the transplant than we expected, and I only hope that the catheter holds on until they call.
All the medical info I entered on the site is probably moot by now. I think dialysis changes everything. I need to get her past lab reports from when she has been on dialysis and enter those.
I think she is doing well on dialysis, but... I think she is getting tireder and tireder. Her phosphorous was too high last time, and she needs to further restrict her fluid intake. In the last week or so, it has felt like she shifted to being a resident of dialysis land, instead of being the day visitor we thought she would be, and then the tourist she turned into. Now she lives here. And me with her.
I found a website the other day for the American Association of Kidney Patients. It has a web based site where you can load information about medications, doctor visits, doctor names addresses etc. I thought it might be useful to put Gail's stuff on there. Probably mostly useful as a way to make me feel like I am staying in control.
When I got here, I opened the black binder where I was keeping all her medical information and opened it up. I don't think I have opened it since she had the catheter installed, because all these feelings of fear and anxiety just washed over me. I was right back in that place where I was so afraid that she wouldn't agree to go on dialysis until she was really sick.
The last date I have in there is December 19, 2006, when we met with the dietician at the dialysis center.
We have come a long way since then. Dialysis three times a week; she has never missed. We are old hands at it now.
Now my anxiety is banked. I worry about her catheter getting infected, or knocked around by the dogs. I worry that the catheter will fail and she won't have a fistula. I guess they could do another catheter on the other side of her chest. It has taken much much longer to get the transplant than we expected, and I only hope that the catheter holds on until they call.
All the medical info I entered on the site is probably moot by now. I think dialysis changes everything. I need to get her past lab reports from when she has been on dialysis and enter those.
I think she is doing well on dialysis, but... I think she is getting tireder and tireder. Her phosphorous was too high last time, and she needs to further restrict her fluid intake. In the last week or so, it has felt like she shifted to being a resident of dialysis land, instead of being the day visitor we thought she would be, and then the tourist she turned into. Now she lives here. And me with her.
Thursday, July 19, 2007
Church
Dave sent an email a couple of days ago inviting me to stand in for him and the other pastors at church in a few weeks. This is proof, not of God, but that, if there is a God, she has a sense of humor.
I accepted, because I enjoy public speaking, but I have no idea what I will say. It's an interesting process to go through. What would I want to tell people that would be meaningful and interesting?
I'm thinking about talking about waiting, since that is sort of our motto this year. Talk about how waiting burns up your time unless you use that time well. We are waiting for the pups to mature, but need to enjoy them as they are now, and miss what they have already changed out of.
Maybe conscious waiting is what is called for...google Buddha and waiting and see what I can find!
A sermon. Pretty funny...
I accepted, because I enjoy public speaking, but I have no idea what I will say. It's an interesting process to go through. What would I want to tell people that would be meaningful and interesting?
I'm thinking about talking about waiting, since that is sort of our motto this year. Talk about how waiting burns up your time unless you use that time well. We are waiting for the pups to mature, but need to enjoy them as they are now, and miss what they have already changed out of.
Maybe conscious waiting is what is called for...google Buddha and waiting and see what I can find!
A sermon. Pretty funny...
Sunday, July 15, 2007
Saturday, July 14, 2007
Hah! It's mine now, all mine!!
Tizi graduated from Family Dog I class this morning, after a romp on the beach and breakfast at Kelly's. We were so proud! She is such a smart, cute, friendly little pup. We are just delighted with her!
Gail has been really tired lately. I think the dialysis is really wearing her down.
Gail has been really tired lately. I think the dialysis is really wearing her down.
4th of July
The party was great this year. The back yard was sunnier than in the past, because we took some trees down. But we had a great time nonetheless.
It is so much fun to have this party every year.
It is so much fun to have this party every year.
Tuesday, July 10, 2007
Tichka smelling the flowers
He's been tearing around with Tizi, rolling and tumbling in a roiling mass of puppiness when he stops a moment to smell how nice the hydrangeas are in the evening.
Tizi relaxing in the garden
After a rousing game of chew on my ear and slobber on your collar, Tizi takes a moment to contemplate her happiness.
Uh oh!
The two little rascals figured out how to get in the house and they had a grand old time making mischief! What are you gonna do? Here is Tichka, as innocent as he can be!
Mud =Fun!
This is an old picture of the puppies from January, but it is my favorite. Look how cute they are! Tichka is on the right and Tizi is on the left. We have been working in the garden, and they are covered in mud!
Update
I haven't been blogging much. Gail's blog has become the main way to tell the world what is happening, but it might be good for me to keep this one up as well.
Status report: Gail: She has been on dialysis since December 13th, almost 7 months. We never thought it would take this long. Her transplant coordinator says they just haven't been receiving type A organs. He said today that she is one of the top 5 or 6 on the regional list, so she could be the best fit for the next organ that comes in of her blood type. Or it could take some time. The more we know, the further off it seems, so that is a little depressing.
Robin and Sachi pick her up after dialysis every Tuesday and Thursday, which is of immeasurable value. They aren't available for the next three weeks, and it is just a bear trying to figure out the easiest way to get her home. I think I am getting it worked out tho, with a little help from our friends. I realized that it is easier for me to ask for help than it is for her. So I did, and everyone responded quite wonderfully.
Status report: Puppies: They are wonderful and smart and cute and rascally. They just turned 8 months old, and they appear to be willing to sleep a little later in the morning. That is a relief, because we were pretty much being awakened at around 5:15 every morning!
Status report: Me: I'm fine, I guess. Gail is doing the heavy lifting, and I am trying to support her. Sometimes I find myself being irritated by her passivity, but I think she is just tired. I will be so glad when the transplant is over.
I haven't been blogging much. Gail's blog has become the main way to tell the world what is happening, but it might be good for me to keep this one up as well.
Status report: Gail: She has been on dialysis since December 13th, almost 7 months. We never thought it would take this long. Her transplant coordinator says they just haven't been receiving type A organs. He said today that she is one of the top 5 or 6 on the regional list, so she could be the best fit for the next organ that comes in of her blood type. Or it could take some time. The more we know, the further off it seems, so that is a little depressing.
Robin and Sachi pick her up after dialysis every Tuesday and Thursday, which is of immeasurable value. They aren't available for the next three weeks, and it is just a bear trying to figure out the easiest way to get her home. I think I am getting it worked out tho, with a little help from our friends. I realized that it is easier for me to ask for help than it is for her. So I did, and everyone responded quite wonderfully.
Status report: Puppies: They are wonderful and smart and cute and rascally. They just turned 8 months old, and they appear to be willing to sleep a little later in the morning. That is a relief, because we were pretty much being awakened at around 5:15 every morning!
Status report: Me: I'm fine, I guess. Gail is doing the heavy lifting, and I am trying to support her. Sometimes I find myself being irritated by her passivity, but I think she is just tired. I will be so glad when the transplant is over.
Saturday, February 03, 2007
Sleepy
Dropped Gail at dialysis an hour ago. I am so overwhelmingly tired I am falling asleep over my chai
Friday, February 02, 2007
Red-letter Day
Let the record show that yesterday, February 1, 2007, was the first puppy-accident free day at our house!
Huzzah! Nazzaza! O frabjous day, caloo calay!
The puppies are awesome!
Huzzah! Nazzaza! O frabjous day, caloo calay!
The puppies are awesome!
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